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#MEAction Scotland’s plans for #MillionsMissing
This year, #MEAction Scotland will be doing smaller, more focused activities for #MillionsMissing than previous years, and we are
Join the UK and Scotland’s digital campaign this #MillionsMissing
May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and
ME & Long COVID patients need telemedicine prescribing flexibility
DEA should amend its proposed rule to ensure access to care
NIH Must Not Overlook Evidence of Exercise Harm
Long COVID Exercise study must address safety, efficacy concerns.
#MEAction Scotland responds to the updated Scottish Good Practice Statement
The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023. The decision
MEAction questions Long COVID exercise study’s safety, efficacy
Calls for immediate public release of RECOVER’s clinical trial design
#MEAction Colorado Works With Governor’s Office to Create A New Senior Policy Advisor Role on Long COVID and Post Viral Infection Planning–Leading to Statewide Report on Long COVID
#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February
Woman with Severe ME and EDS starving to death in NHS hospital
UPDATE: We want to provide a brief update on Sami Berry’s case and what she needs help with now.
The Scottish Parliament debate on ME
Article summary: Sue Webber MSP’s Member’s Business debate took place in the Scottish Parliament on Thursday 2nd February, 2023.
Moments that Warmed Our Hearts
This community is at the heart of everything we do. With this being a centering foundation for the work
DHSC released a new progress Report
DHSC has released an update on the progress of the work underway to support the development of a Delivery
Let’s Look at #MEAction’s Top Hits from 2022
As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished
Ask your MSPs to stand up for people with ME
Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and
#MEAction Scotland’s November Community Call
#MEAction Scotland’s latest community call took place on Wednesday, 23rd November. People with ME from across Scotland joined four
I live at the intersection of pandemics: HIV, ME/CFS & Long COVID
Reflections on embodying intersecting identities of disease and disability
Facets of ME: Centering ME During the Holidays
Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays!
My Truth, Our Trauma, & A Call to Keep Fighting
Reflections from the World AIDS Day White House Protest
Take Action Virtually with our White House Protest
AIDS, ME/CFS & Long COVID activists demand Biden, Congress fund pandemic plans
On World AIDS Day, We’re Taking Action at the White House
White House Must Confront Global Health Nightmare of Colliding Pandemics
Infection-associated chronic disease experts needed at ARPA-H
Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research
BOLD ACTION is a Commitment to Healthcare Justice for People with ME
BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and
What Primary Care practitioners need to know about the new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome in adults
Caroline Kingdon’s new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as
#MEAction Response to NY Magazine’s Egregious Article on ME and Long COVID
#MEAction has sent the following email to editors at New York Magazine to request it remove its fallacious article about Long COVID and ME.
#MEAction’s BOLD Press Strategy Leads to BIG Press Payoff!
Taking BOLD ACTION with our press outreach has led to national media writing about ME.
Interview with #MillionsMissing France: Rally in Bourges
#MillionsMissing France has been busy.
Ask your MSPs to sign motion S6M-06112 and support people with ME
At #MillionsMissing Scotland many MSPs pledged their support for people with ME, and now they have a chance to
Long COVID’s U.S. Economic Impact Est. $140-$600 Billion Annually
Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.
New Diagnostic Codes for ME/CFS in the US ICD-10-CM
Code change will ensure US can track diagnosed cases of ME/CFS in newly created electronic health records
Members of the Scottish Parliament pledge their support for #MillionsMissing
On Wednesday 28th September, #MEAction Scotland led a successful #MillionsMissing demonstration outside the Scottish Parliament – the first time
#MillionsMissing 2022: Activism From Home Was Beyond Impressive
There has been so much happening since the #MillionsMissing protest on September 19th. We’ve shared some of our amazing
Tell HHS about your experience of healthcare discrimination
People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there
#MEAction & Mayo win Grant for Diagnostic Improvement
Amazing news! #MEAction and Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS!
DHSC release progress update.
DHSC has released an update on the progress of the work underway to support the development of a Delivery
#MillionsMissing Press Hits are Rolling In!
The press hits are rolling in! The media showed up in a big way yesterday to cover our #MillionsMissing
Protest at White House to Tell President Biden “Pandemic Is NOT Over”
Protesters disabled by Long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) lay down on the White House sidewalk today risking arrest to tell President Biden that the pandemic is not over, and that millions are being disabled from post-viral disease, including Long COVID and ME/CFS.
Americans Disabled By Long COVID and ME/CFS Protest Biden’s Claim that “Pandemic Is Over.”
Protesters disabled by Long COVID and myalgic encephalomyelitis (ME/CFS) are protesting at the White House sidewalk TODAY at 12 p.m. ET to say that the “pandemic is not over,” and to call on President Biden to declare Long COVID and ME/CFS a national emergency.
New date for #MillionsMissing Scotland
Following the postponement of #MillionsMissing Scotland, the demonstration has been rescheduled to Wednesday 28th September. #MillionsMissing Scotland will now
LONG COVID and ME/CFS Activists Plan Civil Disobedience Protest at White House on Sept. 19
The LONG COVID and ME/CFS community are planning a protest in front of the White House this Monday, Sept.
#MillionsMissing Scotland postponed
The #MillionsMissing Scotland demonstration, due to take place on Wednesday 14th, has had to be postponed. Following the death
#MillionsMissing London is Postponed
Due to the death of her majesty Queen Elizabeth II and the period of national mourning that we are
NIH Extends Funding for ME/CFS Research Centers
The National Institutes of Health (NIH) has taken steps to fix a “funding gap” in the timing of research
Virtual Actions For #Millions Missing London-Social Media Action and Letters/emails to Wellcome Trust
We are asking all our supporters, people with ME and people with other complex chronic conditions to lobby the
Protecting the Most Vulnerable: Complexities of Vaccines and Chronic Illness
It has been over a year since the COVID-19 vaccine became available, and a subset of people with myalgic
Ask your MSPs to join us at #MillionsMissing Scotland
Whether or not you can join us in person at this year’s #MillionsMissing, you can help to make it
How Dept. of Labor can better track disability from chronic illness
Earlier this month #MEAction collaborated with Patient-Led Research Collaborative (PLRC) to suggest changes that the U.S. Department of Labor
Facets of ME: Travel Tips
Welcome to August’s Facets of ME! If you are unfamiliar, #FacetsOfME is a new #MEAction feature this year where
The DHSC have released details of their process in the Development of a Delivery Plan on ME
On the 12 May, World ME Day, the former Secretary of State for Health and Social Care, Sajid Javid,
Severe ME Artist Project 2022 — Gallery
A collection of works by artists with severe ME.
Just In Time for the School Year: A New Pediatric Pacing Guide
#MEAction is excited to share a new and much-needed resource just in time for back to school! We are
An update on the Scottish implementation of the NICE guideline
As we announced in February, the Scottish Government has committed to implementing the new NICE guideline for diagnosis and
Dept. of Labor hosts dialogue on Long COVID in the workplace
The U.S. Department of Labor (DOL) has opened a national online dialogue on “Understanding and Addressing the Workplace Challenges
#DisabilityPrideMonth: Listen to The Century Foundation’s podcast Off-Kilter
As part of #DisabilityPrideMonth, The Century Foundation’s podcast Off-Kilter has been hosting a series of conversations featuring Disability Economic
New #MEAction Volunteer Survey
#MEAction is excited to announce our new Volunteer Survey! We invite everyone to complete the survey. The survey link
#MEAction Recognizes & Celebrates Pride Month 2022!
#MEAction recognizes and celebrates Pride Month! As a community that welcomes and encompasses all, this Pride Month, we asked